RARE-X is a 501(c)(3) nonprofit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.
RARE-X is piloting a series of demonstration projects, in partnership with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support researchers developing treatments for rare disease patients.
RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, and other technology partners, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).
Since RARE-X is a nonprofit, there is no cost to you or the Usher syndrome community.
